Sunday, May 31, 2009

Summer had a fever of 101.6 an hour or so ago, so I am not sure if that means we are in for another 48, but it might. :( She still has not pooped. Getting her to take her stool softener is still rough. I really wish she would just take it, but it seems like most of the time we end up in a stand off. Her refusing and me telling her she will take it. It can get pretty ugly and that upsets me. I wonder if this will ever get easier for her. I have tried explaining to her we have to do what the doctor says, but sometimes she still doesn't want to. She doesn't think the medicine is working because she still hasn't pooped. If she does not see immediate results when I tell her what a medicine is for, she assumes it isn't going to work so why take it. She is really smart, but of course not smarter than the docs prescribing the meds. I just wish they could figure out a way to get the poop out. They don't want to mess with her butt at all because oncology kids don't heal very well since their immune system is shot. So, the risk of going that route is too great. Tomorrow I am hoping to get with a Dr. to see if there is anything else we can try. They did another x-ray of her belly today, but we won't get the results until tomorrow because their is no pediatric radiologist on the weekends. In the meantime, the belly pain continues.

She is wanting to eat, but I think her mouth sores are hurting her....along with her belly. She will take a bite of something and then say, "My belly hurts." I also noticed her wince a little like she was in pain when she tried to chew up a frosted mini-wheat. :( Despite the new reward/sticker chart I made the other day, we are still not getting 4 swishes a day in. We are doing better though.

She is still on the shots because her numbers are still low. Today she had to have platelets because they were only 13,000. They wait until they are below 19,000 to them to her. I found out a normal person has 130,000-400,000. Thankfully, it is a painless process. Her hemoglobin was above 10, so no blood was needed. They usually wait until it drops below 8 to give her a transfusion.

We had a nice picnic lunch outside today despite the heat. Summer didn't eat much, but she did ask for a hot dog and cheese sticks. She tried both, but only ate a few bites.

This trip to the hospital has been no fun. She has rarely felt like playing and I have been down in the dumps myself. Where did the fun mommy go????

The last thing I wanted to mention is that her beautiful, long eyelashes are about half gone. She has been rubbing her eyes a lot again today. I'm not sure if the eyelashes are getting in them or what, but wet washrags are her friend.

Please continue to keep us both in your prayers. Pray that God will give us the strength to continue on fighting the good fight. There are lots of frustrating moments where I'm sure Summer and I both just want to throw our hands up in the air and give up, but that is not an option. We will beat this thing. We have to.

Saturday, May 30, 2009

Today I got a nice break after a rough morning. Summer put up a fuss when it came time to take her meds, in particular the liquid Doc-o-lace. The first time she ended spitting it out and it got in her eye. She also bumped her head during the struggle and has small knot and bruise to show for it. After we were both worked up into a tizzy, I left the room for a few minutes to try to calm myself and allow her to calm herself. By the time the nurse brought her more, she was ready to try again. Well, she wanted me to put in her Sprite so she could drink it with that. But, then after tasting that, she decided she just wanted the new Sprite that hadn't been opened yet. LOL I finally got her to drink it and after that I left because my dad was here to take over. Thankfully, she did not seem to mind I was leaving. My mom relieved him around noon. I later Summer was not very playful for either one of them, but I'm sure she did enjoy their visits.

She did almost get a little jolly this afternoon, dancing around the room listening to her Ipod. It was cute and so awesome to see her perky and smiling. Her toys are still in her toy box which is unusual for us to have been here four days and not have them spread all over. She has colored some, but no major playing. Book reading has also been an activity of choice.

Her temperature is gone for now. I think it got up to 100.7 today, maybe a little higher. The nurse weighed her a while ago and she is down to 30.1 lbs. That is no surprise since she is still not really eating. She did eat about 1/3 of a thing of lemon yogurt and about 4 bites of chili this afternoon. She tried a grape, but ended up spitting it out. She says her belly hurts after she eat a few bites of whatever, so I am guessing she will not be eating much until we get all this poop out of her. So far it is pretty much all liquid coming out, but not nearly enough in my opinion. Sorry for grossing you out....

I am feeling like I am jinxing myself every time I write so I am scared to say anything that would even slightly prognosticate the future. I recall writing last week how this cycle was not as bad as the first, and it hasn't been at least nausea wise. The fever is the major issue. The first cycle we were in the hospital almost a week for a fever. We have been in 4 days so far this cycle.....

Summer is whining in the bed. Her belly is hurting and she wants me in the there with her. Problem is, I'm not sleepy. Maybe I'll just move over there and that will settle her enough so she can rest peacefully. This couch is making my rear a little sore anyway. I'll be playing Spider Solitaire until I feel I call sleep. I still haven't won a game and I've played at least 25 in the past two days. I must really love a good challenge!

Friday, May 29, 2009

Summer is full of poop! So, they are putting her on Doc-o-lace twice a day and also Miralax. They put the Doc-o-lace in with her Tylenol, but she could tell so I don't know how well she will take the Tylenol now. Maybe we could mix it with some ice cream and the rest of her pills in the morning. She had to take two packages of Miralax tonight with either 12 oz. of apple juice or Sprite. So, I mixed the two with 8 oz. of Sprite and she has drank half of it. She is sleeping now, but when she wakes up I will try to get her to drink the rest. What she has drank so far is actually more than she has drank in the last two days. Hopefully, if they get her poop moving along, her belly pain will ease up.

The first x-ray of lungs showed nothing so that is also good news.

Looks like we are in until at least Sunday and probably more likely Monday. Hopefully the fever will go away, but when the Tylenol wears off, it has been shooting back up. So, we are still at least 48 hours away from getting out of here.

Another bit of good news is the 2nd culture is still negative. They are doing a 3rd now. Hopefully, it will again come back negative which the resident says they usually are.

Summer just fell asleep on the couch beside me. She has been up pretty much all day, but is still not doing much. We read some books this morning before I went to workout. When I got back from the gym, a nurse came in and said she was here to take her to x-ray. I was completely confused and called the nurse to see if they were taking the right person. Sure enough, they were. The doctor ordered an x-ray since Summer has been coughing. The only time I have noticed a cough is when she gets upset about taking meds or something similar. Then she will cough and sometimes end up throwing up, but sometimes not. So, I guess that is why they did the x-ray. I still haven't heard anything about the results, but I am curious to see if they saw anything in her lungs.

She has been complaining of belly pain all day. It is still above her incision, in the middle of her belly. I assume this is where her stomach is. I told her to try some yogurt or chocolate milk and maybe that would help. Not sure if it really would, but she does need any calories I can get into her. Anyway, she took one sip of chocolate milk and told me it didn't work. That was the end of that. :) I tried to explain to her it wasn't going to help right away, but she didn't seem to care about my explanation. All she knew was her belly still hurt and she was done with the milk. :( Before we were even aware she had cancer, she occasionally complained of belly pain too. The doctors never really seemed concerned then when I told them before, so I am guessing it might just be something she will have to live with. That is, unless one of the doctors decides to explore the cause of the pain further. Even then, it might not be fixable.

She wanted me to bring her some grapes when I came back from taking a shower, but the store did not have any seedless grapes. I did get her a big cookie from Panera which she said she would eat later. She was so excited to see it. She said it was the best cookie ever and compared it to the size of her head. Go me!!! She did take two or three small bites of it, but then put it up for later. I just hope I don't end up eating it first. LOL

I was hoping she would feel up to going out to the rooftop garden today, but she just said she didn't "feel very well." I am not really looking forward to another lonely Friday night in the hospital, but it may end up being just that. If she doesn't get to feeling better, she will probably end up sleeping through it and I will play Spider Solitaire a hundred times and never win. Oh well, at least I do have Spider Solitaire. When I get tired of losing, I switch to another game, but I always find my way back to SS. It is the challenge that I enjoy. Maybe tonight will be my lucky night and I'll have an actual win or two. :)

I haven't been taking too many pics lately. I think I took over 2,000 pics of Summer in the past year. I do so love digital pics even though I rarely print them. Photo albums take a lot of time to put together especially when you have to choose which ones to print. The last albums I did was of her first year. Maybe one day I will get around to doing her second year seeing that I already have the album for it. Maybe.....

Summer is set for the ride to my aunt's pool.

She loves riding in Mommy's "cool car."

She takes a break from swimming to color a little.I finally got her to let me put a tattoo on her head. Everyone loved it! She likes to climb at the park, but really didn't get in the water too much.

Wow! A big smile for Mommy!If only it were a real elephant.....

This is the way she likes to ride in chariot - in a seat all to herself. Mogo Noodle :)Looks like her suit was riding up while she was playing Frisbee with Jonathon. LOL

Done swimming on Memorial Day. It didn't last long because the water was COLD! Her fever was 100.7 this morning. She put up a little fuss when we crushed her meds in a spoon of orange ice cream. She covered her mouth and tried to refuse, but I insisted. Then she got so upset she almost made herself throw up. Thankfully, I got her to calm down so we didn't have to repeat the process. I really hope the Zantac will work and help to ease her belly pain, but she still had it all day yesterday and all night too. :(

She agreed to eat a roll from Logans this morning, but has only taken one bite. My breakfast almost made her sick, so I moved to the couch to eat it. I don't foresee her doing much eating today, but hopefully that will change. I think she might be slightly nauseated by food again.

Right now she is sitting in bed, sucking her thumb and watching Mickey Mouse Clubhouse. She did swish for me once today. I am going to try again after a few more cartoons. She is asking to get out of bed so I better go help her. Maybe she is ready to play!

Thursday, May 28, 2009

Summer's fever was 101.4 about an hour ago. So, more Tylenol for her. It has been up pretty much all day. The few times it was under 100, I think maybe it was not in the right spot under her arm. Usually she lets us take it in her mouth, but the past day she has preferred her underarm. Not sure if that is because she doesn't want to give up the thumb or because maybe the sores in her mouth are hurting her. The sores are from the Vincristine, I believe. I have been trying to get her to swish a few times a day with the mouthwash they gave us, but I still haven't gotten the recommended 4 in.

I believe the only thing she ate today was what I mentioned earlier - a few bites of candy bar. Not sure if that is due to nausea or mouth sores or what, but she is not acting hungry. The only thing she has had to drink is a few sips of water. Thankfully, the IV is keeping her hydrated.

They also did another blood culture since she is still running a fever 24 hours after the first culture. So far the first one is negative. Yay! But, she is still not feeling good with the fever hanging around so I am curious as to what is causing all this. Of course, we may never know for sure.

I hope she sleeps tonight. She has slept almost all day, except for probably 4 or 5 hours. They said that her fever will eat through her platelets so I imagine she will need more tomorrow. Who knows what the new day will bring? I'm hoping for a playful little girl, but I will take whatever I get. I am just so thankful that God has allowed me to mother this wonderful child. She is truly a blessing from above!

Summer slept until almost 8:00 this morning. She had a good night although she kept her fever all night. She got sick at 6:07 a.m., but went right back to sleep afterwards. Today she has been pumped full of meds and platelets. Her platelets were only 6,000 this morning which is really low. They were 80,000 two days ago. So far today she has had a couple of doses of Tylenol, Zantac, Zyrtec, Benadryl, & Cefepime. The two Z drugs were pills which we crushed and put in a spoon of ice cream (separately). She took them okay although she wasn't in the mood for any extra ice cream. She hasn't eaten anything today but a couple of bites of a Snickers bar. The nurse even brought her an orange Popsicle, but she turned it down so it is melting on her food tray.

We did not get a menu for today despite me calling the cafeteria as soon as we got a room yesterday. I also called the nurses station a couple of hours later, but still no menu. So today we are getting nothing she, or I, will want. I guess it is good she is not eating. Of course I already have all her favorite foods waiting just in case she does get hungry - chili, spaghetti, chicken noodle, cheese & crackers. So far she is refusing everything I offer. :( But, I guess that is part of her feeling puny.

Her temperature is still going up and down. It got up to 101.6 last night, and is down to around 100.8 right now. We may be in for the weekend too if it does not stay down. Thankfully, she has not had any loose stools today. That is awesome because I was worried she might get what they call "slick gut" which is no fun at all.

She is curled up beside me on the couch watching Barney (which is where she prefers to be when we are in the room). I prefer the bed, but guess who usually gets her way. Yep, my little girl. This morning I thought she was going to let me go to the gym when her daddy came by, but nope. She said, "But I love you so much." How could I leave when she obviously needs me here? Well, that's easy - I didn't. She has agreed to let me go home for a while when my mom comes in a bit. I guess it is okay to let her have her way right now. She is suffering far more than I am. I am ready for a nice, hot shower and some alone time though. It is so hard to be couped up in this room all day although the snuggle factor is amazing right now.

She has also been rubbing her eyes like crazy since we got to the clinic yesterday morning. Not sure what is up with that, but we keep a wet washcloth close by at all times. It makes me wonder if maybe there is something she is getting that makes her eyes water (at least that is why she says she is rubbing them). Hmmmm.

Her belly is still hurting a lot. That is why they started giving her the Zantac. I hope it helps, but so far she is still complaining about it hurting. I really wish we could figure out why and fix it because I feel completely helpless every time she tells me, "My belly hurts." Sometimes I rub her belly and I'm not sure it really helps, but maybe it does a little. Oh well, I can only do what I can do. The rest is in God's hands, but they seem to be pretty full these days..... Life is so frustrating sometimes!

Wednesday, May 27, 2009

Summer has kept the fever all day. It got higher this afternoon up to 101.3, I think. The nurse just came in and it was 99.7 so that is good. She has been rubbing her eyes all day too so they gave her some Benadryl a couple of hours ago when they did her second dose of Cefepime (the anti-biotic). She is also on some Zophran for her vomiting although she has really only vomited once since we have been here. It can't hurt though! I am hoping she does not wake up at the crack of dawn, but she probably will since she went to bed shortly around 7:30 p.m.

We have had a pretty uneventful day. Spent half of the day in the clinic and the other half in our small (lol) room. We went for a little walk after my mom and Clint left this evening. Summer wanted to meet the "new" kid who also has kidney cancer, but he was in his room so I didn't want to knock. Don't want to scare the new people by being overly friendly. I did talk to his mom a little in the hall and they are still trying to diagnose his kind. He is two years old. It is sad because it is in both his kidneys so I guess that is why they haven't done surgery yet. It is so hard to see the new people come in, but it seems to happen all the time so I am getting used to it. Why, why, why do so many people have cancer these days???? I read somewhere today that 3400 people are diagnosed with cancer in the U.S. everyday. That is so scary. Oh well, only one left in my little family to go and that's me.

Enough unpleasantness. I guess I am going to get off here and try to sleep even though I am not sleepy. If that doesn't work, there is always Spider Solitaire.....

Yesterday, we were the last to leave the clinic. Today, we are the first ones here. We arrived around 7:45 this morning because Summer is running a fever and vomiting. So what I am wondering is, did I jinx myself or was it already happening???

She vomited in the bed before midnight. Then, she got up around 3:00 to do it again. I took her temperature because she was feeling hot and it was 100.3. I knew we were going to be admitted today, but I wanted to at least finish out the night at home. She got in our bed and I actually ended up going to get in her bed after a while because she was so hot and hogging my side of the bed. :) Around 6:30 she got up throwing up again, and I hopped out of her bed to help her. I took her temperature and it was 100.5. I called the clinic and they told me to just come here first instead of the hospital because they didn't want her to get lost in the shift change. I gave her some Ibuprofen after I got off the phone, but I found out that was the wrong thing to give. The nurse here told me I should only give her Tylenol because the Ibuprofen can hurt her stomach and cause her platelets not to work right. Now I know.

So, here we are. Summer has been doing crafts and playing since we got here. We've gotten the really unpleasant stuff over with too. :) While the nurse was finishing up, Summer informed her of the three things she "hates" (I really don't like it when she uses that word although I'm guilty of using it myself). Luckily, we only have to do one more of those things today.

Tuesday, May 26, 2009

We arrived at the clinic a little before 9:00 a.m. and did not pull out of the parking garage until 6:23 p.m. And, we only made it to one of our appointments!!!! They accessed her and gave her the Vincristine shortly after 11:00 a.m. We, the nurse and I, decided to go ahead and deaccess the port after instead of leaving it in, taping it on and waiting to see what her blood counts were. Can you say MISTAKE? Yeah, an hour later we were reapplying the ELMA (numbing cream) so she could be reaccessed because her hemoglobin was low and she needed blood. It's days like this I wish I was psychic. At that point, I knew we were probably not going to make our 2:00 appointment unless they could hurry up and see us as soon as we got there (since we had to wait an hour and a half on the blood anyway). So, I called and ended up just rescheduling. The blood arrived around 2:45 when I learned it would take 3 hours to give it all to her (just one unit). It was a very long day, and I'm pooped even though I just pretty much sat around all day. Thankfully, Clint brought Summer and I something home from Logans since he wasn't hungry enough to eat the two meals he ordered. LOL

On the way to the car this evening, Summer told me the three things she "hates": 1. her port 2. shots 3. finger pricks. I really wish there was something I could do about those things, but I can't. She will just have to learn to adjust I guess.

She's asking me to come watch Barney with her now so I guess I better even though I just saw this same episode yesterday. The things I will do for that girl..... But, at least it isn't Blues Clues. So, that is something to be thankful for. :)

Her ANC was around 300 and is still dropping. It should bottom out this week sometime and then start rebuilding. So, we are still doing the shots. Her platelets were 80 something thousand which wasn't too bad. But, since all her numbers were low we go back on Thursday to have them checked again to make sure she doesn't need more blood or platelets. I just hope it doesn't turn into another all day affair. Keep us in your prayers! Also, pray for NO fever. That would mean another trip to the hospital for at least 48 hours. When her blood starts rebuilding, that is usually when the fevers occur. So far we are two fevers for two cycles. That's one statistic I would love to beat. Please no fever this cycle!!!!!!!!!!!!

Summer has two Dr. appointments today. One for her second dose of Vincristine, and the other for a follow up with her radiation doctor. I am not really excited about either, but she is less excited. I have already started packing food since I imagine we will not be home until late this afternoon.

Chicken noodle soup. Check.

Cheese and crackers. Check.

I may throw in a some fruit too if I have time. I'm not sure what time her appointment is so I am just going to try to get there early so we can get her started. Plus, I need to run to the pharmacy to pick up more Neupogen for her shots. Sunday we gave Summer her shot right before church started since she was staying with my mom all weekend. Well, when she saw the needle she got upset of course. I don't know why we didn't think to leave the auditorium (???) and do it somewhere private. I guess I just wanted to get it over with so we could part on a good note after church. Anyway, Clint was administering the shot while I held her. He cleans her and sticks the needle in only to realize that the syringe is empty. He used the shot from the day before!!!! Needless to say, that was not good. So, he had to get the other out and put the needle on the syringe. All the while, Summer was squirming in my lap not sure what was going on. I mean this is the first time we have messed up and had to poke her twice. After it was over with, which is rather quick, I noticed a few people looking at us, pitying poor Summer. Of course, it was no big deal since we have the best people ever at our church. I have never felt judged in that place and I will tell you that is something I would say is hard to find in a church. I just love it! Summer stayed curled up on my lap for while which was nice, but I would prefer her not have to get the shots to get the good lovin' that follows. I feel her pain and it hurts me too.

Yesterday, when I told her we were going to the doctor, she said something like no more doctors. It is so hard to make cancer fun. But, I am trying to do my best. We will probably do some kind of craft today. Hopefully, Ms. Katherina will be there. She is a volunteer who sometimes reads to Summer and plays with her and the other kids. There are several kids I hope are not there. :O There are several I hope are. :) I guess I don't get to pick so we will just have to see who we end up with. That place can turn into a zoo with all the kids running around from the kitchen to the craft room to the play area. Oh yeah....and the Drs. and nurses station....and everywhere. I am so glad Summer is not wild (which is what I would consider some of the kids to be).

I guess I better go get prepared for the day. Summer is still in bed. It looks like she crawled in bed with her daddy while I was gone to boot camp. He's lucky she didn't make him get up.

Sunday, May 24, 2009

Summer is not happy to be back on the shots. The first night she was back on them, I was going to give it to her myself because Clint wasn't going to be home before she went to sleep...or so I thought. She REALLY did NOT want me to give her the shot. She says things like, "I'm not going to let you." Then she scrunches up into a ball to hide her legs. It is so, so sad. So, I ended up reading her books for about an hour until he got home. Then she still wasn't ready. :( Yesterday my aunts and Granny got to see us give Summer her shot. She, again, was not happy about it. She had decided that Memaw would help Daddy when they got to her house, but ended up letting me help Daddy. My family was teary eyed after the ordeal was over and of course so was Summer. But, a few minutes later she was fine snuggled up in my arms while we played dominos. Memaw came to pick her up a little while later and she was off to her happy place. LOL Today they are going to bring the shot I sent with them to church so I can give it to her there since Summer will be staying another night with them. Oh how lucky I am.....

I love, love, love holidays, especially when they are spent with friends and family. This weekend is packed full plans and I love it! I can't wait to see what the day brings. Oh yeah, except for that darn shot.

Saturday, May 23, 2009

Well, my sunshine is in her room probably playing with one of her two new toys she got with her birthday money. Yes, I let her spend it. What is the point in saving it anyway? I know she does already have a million toys, so what is a million and two going to hurt? We went to Wal-Mart yesterday to let her pick out $25 worth of toys. I must say, money does not go as far as it used to. But, she did end up with a cash register which I know she will love. They have one at the clinic, but it doesn't work. Now, she has her own and it even adds so maybe she will learn something from this toy. The second makes me slightly nauseous because who wants there three year old playing with Barbies, but I let her get it anyway. I remember playing with Barbies as a child, but I think I was older than her. I can't remember much, but we did have the Barbie pool which was fun. Summer picked out a bathroom furniture and accessory set for her Barbies. Of course, they didn't have the pool. Thank God! That just makes me think of two words -wet and messy. As a kid, it would be fun, but as a mom I tend to think a little more practical. BTW - the bathtub will never see water unless it is actually in the tub with Summer. :)

She woke me this morning a little before seven informing me that it was time to get up. "You wanna see?' she said. The sun was up, so that means we can get up. LOL I was already in my bed wondering when she was going to get up because she did not wake me to pee all night. So, of course I was in my bed worrying that she might have peed in the bed....or died in her sleep. Crazy the things that cross a mother's mind when something that usually happens does not.

We headed to the couch to check out the selection of cartoons we had this morning (we only have cable, none of that fancy satellite stuff for us). Let me just tell you, I was VERY disappointed. The local channels did not have any cartoons. One had a child soap opera (that's what I call them anyway because they are just a bunch of kid drama). The other's I'm not sure, but not cartoons. As a child, all we had was 3, 9 & 12 so Summer would have been SOL if those were the only channels we still had. I did find a few cartoons, but none of them would I call good. "Between the Lions" is what she picked which is the best of what there was.

Summer is not feeling very well right now so I am going to go hold her for a while. She has been doing great overall and I am sooooo thankful she has done this well so far. We were supposed to go to the pool this weekend, but it looks like rain. I'm sure it will still include lots of time with extended family. YAY!!!!

Thursday, May 21, 2009

Last night we were in bed before 7:00 which is when the shift change occurs for the nurses. I was awakened shortly before seven by the day nurse bringing in the night nurse (aka the nurse from ----). We have only had her once before and we will never again. I will take Summer home before we have her again. If the kids are on chemo, the protocol (I believe - at least according to the nurse we had the two nights before) is too not wake them up for vitals if they are sleeping. I guess this nurse did not get that memo. So, she woke Summer up to do her stuff and then proceeded to turn on the light above the bed and asked Summer to look into it so she could see her eyes???????? I have never had a nurse do this. Only Drs. look in her eyes. So, that started me out on a bad note (even though I was already disappointed when I saw her the first time). This nurse cuts the lights on every time she comes in. She also makes a lot of noise and wears squeaky shoes. Not only that, but she listened to Summer's breathing and stuff with her stethoscope every time she came in the room. Again????? I think she wants to be a Dr., but she probably couldn't pass the test for that. She is usually running around like she is way behind. Well, last night we must have been her only patient because I swear she was in the rooming waking me up every hour or so. The other night nurse we had on this stay was extremely quiet and VERY GOOD. The "bad" nurse also set the alarms off on both of the IV pumps at least three times when she came in the room last night. The other nurse, never. Can you say frustrated??? Anyways, I will be requesting that we not have her again. It is just not a restful night with her.

Summer slept for over twelve hours last night so that was good. Also, no more sickness since yesterday morning. Yay!!!! She is currently watching Blues Clues. Poor me. :) I had that song in my head all night last night. We should be going home in a few hours. I can't wait, although Summer is her usual unexcited self thanks to the port having to be deaccessed.

I am hoping for a nice weekend. My mom's pool is almost ready and I know my aunts is. My aunt who lives close to Atlanta will be coming up this weekend to visit my aunt with a pool so we may head over there too. Of course, that is assuming I have Summer. I know she would rather be at Memaw's house, but I will wait for her to mention it so maybe I can have her some this weekend too. It is hard for me to say no to her when it comes to visiting Memaw because she has such an awesome time there. Well, time for me to go workout at the gym across the street. Daddy just came to give me a break. Woo-hoo!!!

Wednesday, May 20, 2009

Summer is having an awesome day!!! She has been eating and playing since around 5:00 a.m. this morning. Well, that is what time she got up. Thankfully she was happy to watch cartoons in bed so I could get a little more rest. That lasted an hour or so then she wanted to watch a Blues Clues DVD. So, I got the laptop out and put it in. It made me appreciate Barney even more. Even though we watch a lot of Barney, he does not annoy me as much as Blues Clues. He is always teaching something positive and probably educational. But, looking around and seeing paw prints???? Not for me. Bring on the Barney! At least I can sing with Barney. Summer is starting to sing more and more. She was listening to her Ipod the other day (Yes, she has an Ipod, cancer too so....) and she was singing. She stopped to tell me, "Mommy, I know all these songs!" It was cute, as is listening to her sing. She is just so precious. I could go on and on.

She emptied her stomach twice today. Same as yesterday. But, afterwards she was ready to play again. Around 10:00 this morning, she told me she was really hungry but couldn't eat. So, I suggested a Popsicle. She thought that sounded good and called the nurses station to ask for an orange one. She ate almost the whole thing. The last bite fell off the floor and the preacher pitched it in the trash for us. Then her belly hurt, so she got in my lap. Then she was cured. LOL. I must have a magic touch. I get that from my mom. She definitely has that touch even now. Of course, most kids are comforted by their parent's touch. It is just so awesome to experience it even though it doesn't always work. I definitely feel like I am getting a little attached to Summer myself. :) I guess there are worse things in life.

We should be getting out tomorrow. Chemo should be finished midday and hopefully they will get us out of there shortly after that. This trip has been pretty good for her. I can't complain, unless you want to hear about small rooms again. I did manage to snag an electric bed the other day too. The room next to ours had one and it was empty. God is always there in the darkness shining a little light to help lift me up. Sometimes I just have to look for it.

Tuesday, May 19, 2009

Summer was admitted yesterday and started chemo around 10:00 this morning. She has had Vincristine & Cyclosphamide & is getting Doxyrubicin as I type continuing for the next 40 or so hours. I'm not sure what time they started it. My sister came to give me a break earlier today. So far Summer has thrown up twice. She has slept a lot since about 3:00 p.m. My mom & Tre came by after work so I could go eat with Clint. Now I am back, full and refreshed. I am going to crawl in the bed with her now and hope she has a decent night. She is stirring now so I'm off to take care of her. I think we will get some good snuggling in tonight!

Monday, May 18, 2009

Well, we go again today to see if Summer's counts are high enough for admission. I think we will try a finger prick today since last week was pretty crappy having to be accessed twice and then deaccessed an hour or so later. So, if Summer is up for it, finger prick it is. It is sad how quickly she hides her hands behind her back knowing she will have to give one up, but not wanting to.

She spent most of the weekend at my mom's house. I got her back at church yesterday only to have her ask me on the way home when she was going back to Memaw's to spend the night. I told her maybe next Saturday. She said, "Can I stay two nights?" LOL She is so smart. And apparently crazy about Memaw & Nanny.

Yesterday after we ate lunch (I made her mashed potatoes & corn), we went to see a play called "The BFG" shorty for the big friendly giant. It was cute although she was a little frightened and sat in my lap the whole time. Some of the characters had these scary masks on top of their heads so whenever they were on stage she was a little tense. I think she enjoyed it, but not as much as "Go Dog Go." Maybe if it didn't have the scary masks, she would've been okay. Of course, she was scared before she even saw them. For some reason, she does not have a good image of giants. My dad went with us which was nice since Clint was busy changing the oil in my car and washing it. Yay for that!!!! I just wish he would've had time to do the inside. Maybe sometime this week I can convince him to do that if we are inpatient.

I really hope they keep us today because I want to get this over with. I have a feeling that even if her platelets are low, they will take us and just give her platelets today. Of course, nothing in life is certain. Except for death and taxes....sad, isn't it?

We are starting the day with smiles on our faces anyway. Summer got up at 6:00 a.m. today after falling asleep shortly before 6:00 p.m. last night. What a long night's sleep! Needless to say there was no convincing her to go back to bed because she wasn't sleepy. She did let me go back to bed for a little while after I hooked her up with some frosted mini-wheats, apple juice, and cartoons. Yay again!

Pray we have a good week and she is not too sick from the chemo, Lord willing we get to start it.

Friday, May 15, 2009

Okay, so aparently if you start a post but don't post it before you write and post another one, it is still shown as being an older post. So, if you want to read about and see pics of Summer's 3rd birthday party, scroll down two posts. Trust me you want to!!!

Also, her platelets were still 69,000 so no chemo until next week. We got back on Monday for admission....hopefully. I am thankful to have the weekend off. Relay for Life is tonight and tomorrow there is a kid fair we may go to.

Thursday, May 14, 2009

Yesterday I failed to mention that Summer did not make counts for admission for cycle 3 of chemo. Her platelets were only 69,000 and they needed to be at least 75,000. They did not give her any though because they were not too low overall, just too low for chemo. Her white blood count was 4.5 which kind of surprised me. On Monday it was 9.?. Her ANC was still fine at 2000. So, despite all those numbers being good, chemo was delayed another two days. If we were on a perfect schedule, it would've started Tuesday, but we don't live in a perfect world. If we did, people wouldn't have cancer, among other things.

We go back tomorrow instead of Monday. One Dr. was going to be nice and give us the weekend off, but another wanted to press on with chemo. If my glass was half empty, I would see this as a bad sign: the fact that we have to hurry up and pump her full of these drugs before it comes back. But, I guess that is the reality.

Anyways, my cup is full and runneth over thanks to God. I was thinking just this morning how blessed I am despite it all. A friend reminded me the other day that God does not give us more than we can handle. And it is true. I have learned to deal with the cards I am dealt and just try to make the best of it. And that is how I live. I try to make the best of everyday and just enjoy all that I do have in life (which is a lot). I try to forget about the "what ifs" and focus things I can control. Like my attitude. Thinking positively definitely leads you on a happier path than thinking negatively. Notice I said happier, not perfect. Okay, off the soap box.

Summer threw up this morning around 6:15. She didn't get up until about 9:15 and shortly after that she had some dry heaving. I am not sure what all this is about, but I called the Dr. and they said she may have a virus. I don't think she has a fever although I am on the lookout for a thermometer right now. The main reason I called the Dr. was because her heart was racing so much when she was throwing up. I have noticed it before when she was sick from the chemo and it just made me nervous that maybe her heart is causing her to be sick since it is racing. But, the nurse thinks it is just racing from the vomiting. I hope so. I know they did an EKG before they started chemo to make sure her heart was strong enough for it. So????? Okay, I shouldn't worry, but she is my baby! God please keep her in Your hands!!!

I am going to get off her and go find her. Last time I saw her she was headed off with her fishing pole and her Paw-Paw. Wonder if she is actually practicing casting or if she has moved on to one of Paw-Paws games. Last night at the neighbors she told us she didn't like fishing. She just likes to play with the pole. I still have time to convince her much fun it is. I guess we will go down and feed the fish again in a little bit. I saw a huge one yesterday, about 1'-2' long. I don't think Summer's pole would reel it in. So, I hope we don't catch that one. Plus, I don't want to try to unhook a fish that big. I just love the lake though. We have turtles, squirrels, birds, ducks, geese, and cranes in our back yard. I think I saw a beaver the last time we were here. Thankfully Summer is an outdoorsy girl, as long as it is not too hot and there are no geese attacking us. They have moved on since their last egg was finally stolen/lost. I'm glad to have the dock back although it might be better that Summer is scared to go out there. Luckily, she is not too much of a wanderer. I just have so much to be thankful for I could go on and on all day.

Summer's party was awesome! It could not have been more perfect in any way I think. All of her friends showed up - Willow, Mason, Liliana, Katelyn, Ashton, Aiden, Gavin, & Katie. I guess Leah and Jonathon are her friends too even though they are really family. It was so nice for so many friends and family to come and celebrate her 3rd birthday. I really can't believe she is three now although she totally looks like a three year old. She could probably even pass for four she is so tall.

Summer and I showed up at the park around 5:15 and she helped me unload the car. It took a lot of trips, but she was right there by my side helping me never complaining once. When we were almost done, two of her friends showed up so they all went to the playground to play while my friends helped me finish getting the pavilion decorated.

During the party, the kids played with sand toys. They played on the playground. Some ventured down to the water and took a dip or just wet their feet. They also played horse shoes and blew bubbles. Of course they all chowed down when it was time to eat. I think the peanut butter and jelly sandwiches were a hit with them. The adults ate up all the chicken salad and egg salad sandwiches too. The only thing left at the end of the party was a few pimento cheese sandwiches and some chips. There were only two pieces of Summer's cake and a few slices of Amanda's cookie cake left too. Not too much cake which is a good thing because I don't need the extra calories. I am always the one to eat the left over sweets in my house. LOL

At the end of the party, we had a pinata which could not have been more perfectly timed. The kids loved taking turns pulling the strings. The last one did not burst the pinata all the way open, so I got to help a little too. :) The kids dove after the candy and prizes. It was cute. They put their goodies in goody bags and then went off to enjoy them. The candy was especially good to Kately and Liliana who found a bench where they could sit and eat it. It was so cute to see them devouring the candy. None of it looked too good to me.

It was such an AWESOME party! The weather, the place, the friends, the family, the food.

Everything was perfect! I do wish Clint's parents and my dad could've been there too, but you can't have everything. I don't think Summer was disappointed that she did not get to have her party at Candyland. She had a blast and that is what counts. Enjoy these pics from the party....

Building a castle with Auntie, Memaw & Leah.

She knocked it down shortly after.Leah, Jonathon, Summer and Auntie are the first in the water.Ashton, Aiden, Katelyn, Liliana & Summer are ready to eatThe Barney stamper was better than the cake apparently. :)

Time for presents....only the older children were really interested, besides Summer that is. :) Summer plays horse shoes with Katie & Gavin. Summer is too busy trying to stand her stick in the sand to pose with Willow. Liliana & Katelyn get their feet wet in a bucket of water. I love responsible adults who actually watch out for the kids. Luckily our friends are all good parents. Gotta love pull-string pinatas!!! Glad to see no one is fighting over the goodies.Summer & Katie with their goody bagsWillow & Mason liked the blowers! Clint trying to see if he can get any candy out of the kids. :pCleaning up the beach area before we left I found this...some misspellings, but cute!The wagon was nice to gather the toys with! Glad I splurged for it. Amanda turned 19 the day of the party ~ Lexie is 7 1/2 monthsCouldn't leave Amanda out.....